A Taxonomy of Reported Harms in Pediatric Autism Spectrum Disorder Screening: Provider and Parent Perspectives.
Marisa Petruccelli, Leah Ramella, Ana J Schaefer and 5 others
PMID 33751375WHAT IT FOUND
Parents and providers reported seven domains of harm from autism screening, including psychological distress, social strain, and financial costs.
Providers noted that borderline scores caused anxiety and doubt about clinical abilities. Parents reported feeling torn between advancing screening and maintaining family harmony.
Key findings
01A taxonomy of seven harm domains emerged: physical, psychological, social, logistical/financial, opportunity cost, attrition, and exacerbation of non-targeted disparities.
02Psychological harms like distress, labeling, and stigma were reported by parents, pediatricians, and early intervention providers, with borderline scores specifically causing anxiety and doubt in providers.
03Social harms included strain on parent-child bonds and family relationships, while logistical harms involved lost income and time for parents, and training costs for providers.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study reports perceived harms, not causally linked realized harms. Participants were from a specific multi-stage screening initiative in a Northeastern city, which may not generalize to other contexts. The taxonomy does not address the transience or persistence of harms over time. The study did not use methodological triangulation like observational data to corroborate reports.
Declared interests
Dr. Sheldrick is co-creator of the POSI screener but receives no royalties. Dr. Carter is co-creator of the POSI and BITSEA screeners and receives royalties on BITSEA sales.
The easy way to misread this
Do not interpret these reported harms as evidence that screening causes measurable adverse outcomes. The study captures perceptions and experiences of harm, not causally linked realized harms, so it does not prove screening is harmful.